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Lung Transplant Program

Patient Story

Katherine Russell: Back To Her Cello After A Double Lung Transplant With Bar

“I used to wake up coughing ferociously every morning,” recalls Katherine Russell, a 23-year-old from Amherst, New York. “I would hesitate to go out on the dance floor, and I used to struggle not to cough through classical concerts — a challenge for a performing cellist.”

After battling cystic fibrosis since birth, Katherine experienced rapid health deterioration in 2012 following a bout of influenza that led to pneumonia. Just two weeks after being airlifted to Cleveland Clinic, Katherine was listed for transplant and a pair of donor lungs was identified. She underwent lung transplant with bronchial artery revascularization (BAR), a challenging surgical technique pioneered at Cleveland Clinic to restore bronchial arterial circulation to her transplanted lungs.

“Now my coughing difficulties are all lifted,” Katherine reflects. “The lung transplant has brought more than comfort — it has raised my quality of life.”

Outcomes

Program Highlights

Cleveland Clinic's lung transplant program is an essential component of a broad medical and surgical strategy to manage all patients with pulmonary disease.

In the last five years, Cleveland Clinic has proven to be a national leader in lung transplant, both in terms of patient volumes and successful outcomes. The transplant program has established a reputation for accepting and transplanting challenging, complex patients, which has led to our high referral rate.

Patient Referrals

Our secure online service, DrConnect, provides referring physicians access to patient’s treatment progress with streamlined communication from Cleveland Clinic physicians to your office, allowing continued participation in the ongoing care of patients. With the best possible treatment plans and coordinated care, our team approach benefits both the patient and the referring physician.

How the lungs function

Your lungs' main job is to make oxygen available to your body and to remove other gases, such as carbon dioxide. This process is done 12 to 20 times per minute.

When you inhale air through the nose or mouth, it travels down the back of the throat (pharynx), passes through the voice box (larynx) and into your windpipe (trachea).

Your trachea is divided into two air passages (bronchial tubes). One bronchial tube leads to the left lung, the other to the right lung. The right lung has three sections, called lobes, and is a little larger than the left lung, which has two lobes. The bronchial tubes divide into smaller air passages (bronchi), and then into bronchioles. The bronchioles end in tiny air sacs called alveoli, which pump oxygen from the inhaled air to the blood.

After absorbing oxygen, the blood leaves the lungs and is carried to the heart. Then, it is pumped through your body to provide oxygen to the cells of your tissues and organs.

After the oxygen is delivered to the cells, other gases are still in your blood. Your blood carries these gases back to your lungs and removes them when you exhale.

The respiratory system has built-in methods to prevent harmful substances from entering the lungs:

The hair (cilia) in your nose helps filter out large particles.

Mucous produced by cells in the trachea and bronchial tubes keeps air passages moist and aids in intercepting dust, bacteria and other substances.

Cilia in the air passages move in a sweeping motion to keep the air passages clean. If substances such as cigarette smoke are inhaled, the cilia stop functioning properly.

Healthy lungs vs. unhealthy lungs

Each person is born with two lungs, but can survive with only one as long as that lung is healthy.

Healthy lungs are made of a spongy, pinkish-grayish tissue. Lungs that have become polluted with harmful carcinogens (substances that can cause cancer) or carbon particles have blackened spots on the surface. Healthy lungs may also have blackish spots, however, they are sporadic and not as abundant as in unhealthy lungs.

Healthy lungs are elastic so they can expand when you inhale; in contrast, a disease like emphysema causes the lungs to lose their elasticity. When a lung can no longer expand properly or transfer oxygen to the blood, that person has difficulty breathing and tires easily; in some cases, he or she cannot walk more than a few steps at a time. Other difficulties may occur because the tissues and organs aren't getting the oxygen they need.

In some lung disorders, removing part or all of the lung can effectively treat the problem. But if a disease affects both lungs, or when medical treatment has not improved the lung condition, the best treatment choice may be a lung transplant.

Lung transplant as a treatment option

A lung transplant may be recommended for patients with diseases such as cystic fibrosis, pulmonary fibrosis, chronic obstructive pulmonary disease (a group of diseases that includes emphysema) or pulmonary hypertension.

Before a lung transplant, you can expect to have a pre-transplant evaluation, which includes a complete physical, consultations with members of the Lung Transplant Team and a series of tests. A pre-transplant evaluation provides complete information about your overall health and helps determine if you are eligible for a lung transplant.

After your healthcare provider has determined that you are a good candidate for a lung transplant, the search for a donor will begin. Locating a suitable donor takes time and the waiting period may be stressful.

After a donor is found, things move quickly. You'll come to the hospital immediately, undergo surgery, and remain in the hospital for two to three weeks or longer, depending on your recovery.

During your recovery, you will learn about your new medications, how to recognize signs of complications, and when you can return to your normal activities. After you go home, you can expect to recover gradually, usually over three to six months.

Follow-up care after your transplant includes appointments with your physician and tests to assess how your new lung is functioning and how the medications are working.

Preparing for your Transplant

How can I prepare myself while I’m waiting for my transplant?

Waiting for a donor organ can be a stressful experience, especially because the amount of time you’ll have to wait is unknown. There are many things you can do to prepare yourself while you wait for a donor lung to become available. Changing your lifestyle before your transplant will help you adjust after the transplant.

Below are some guidelines to follow:

Try to stay as healthy as possible by carefully following the recommendations of the Lung Transplant Team.

Take your medicines as they are prescribed and notify your transplant coordinator if antibiotics are prescribed, if your steroid dose changes or if you are hospitalized for any reason.

Follow the dietary guidelines provided by your dietitian

Weight management is very important while waiting for your transplant. Your dietitian will recommend a weight range for you to maintain.

We require that you quit drinking alcohol, especially if you drank heavily in the past (two or more drinks per day, including beer and wine).

Stop and rest if you experience any discomfort, shortness of breath or chest pain during any activity.

A physical therapist can work with you to plan and develop an exercise program that will give you the greatest benefit before and after transplantation.

Continue your enrollment in a local pulmonary rehabilitation program and remain firm in your commitment to the program.

Keep all of your appointments with your healthcare providers

Until your transplant, you will meet with the transplant pulmonologist and transplant coordinator every two months in order to evaluate your overall health.

Make sure you are available.

It is important for the Lung Transplant Team to know how to get in touch with you at all times.

Your Transplant Team should have the telephone numbers of where you can be reached 24 hours a day, as well as the names and telephone numbers of family members who can reach you.

You must obtain a pager or cell phone so we may contact you immediately should organs become available for your transplant.

We encourage you to purchase a telephone answering machine with remote access so you can check your messages frequently when you are away from the telephone.

Be sure to inform us of your pager and/or cell phone numbers.

If you plan to be out of town (even for one day), give a phone number to the transplant coordinator.

Your transplant coordinator may recommend that you stay within a certain geographic range.

Be prepared with transportation

When you are placed on the organ waiting list, your first responsibility is to plan how to get to Cleveland Clinic as soon as you are notified that a lung is available.

Prepare yourself for this call by making the necessary arrangements for transportation well in advance.

If you live less than 1-1/2 hours away from Cleveland Clinic, the transplant coordinator on call will arrange transportation for you and one family member.

Be prepared by packing your bags in advance

You'll need to be ready to leave as soon as you get the call that a lung is available.

Be sure to include your insurance information and a 24-hour supply of medication.

If you need oxygen, make sure you have enough to get you to and from the hospital (in case the surgery is cancelled).

All necessities, such as pajamas and bedding, are provided and laundered for you. However, you may prefer your own pajamas, slippers, robe or other comfortable clothing (provided you have someone to do your laundry for you).

Please bring your toothbrush, toothpaste and any other toiletries you may need.

You should expect to stay in the hospital two to three weeks.

Because the hospital is not responsible for lost or stolen personal items, please do not pack valuable jewelry, credit cards, checks or large amounts of cash.

You also may want to pack a book, magazine and a family picture or other comforting reminder of home to keep at your bedside.

Learn all you can about the transplantation process and ask for support

Ask your social worker about support groups and other resources so you can receive more information and learn about other transplant recipients' experiences.

Occupy yourself

If possible, don't turn your back on your favorite activities. You can spend the time doing what you enjoy. Now may be a perfect time to learn a new hobby or continue your old hobbies. The time will pass quickly if you spend it doing things you enjoy.

For More Information

If you have any questions or concerns, please call us at 216.444.8282. We will be happy to answer your questions.

Transplant Surgery

Getting the call

When a lung has been identified for you, a transplant coordinator will contact you by telephone or pager. Remember, this could be any time of the day or night.

As soon as you receive the call, do not eat or drink anything (not even water).

Your stomach must be empty before surgery.

It is normal to feel both excited and scared. Because of the natural confusion caused by the need to get to the hospital quickly, you may feel rushed and confused. You’ll be glad you planned ahead to get to the hospital with minimal delay, knowing you have left your home in order.

Getting to the hospital

As soon as you receive the call, bring your suitcase that you’ve packed ahead of time and come directly to Cleveland Clinic. Even though the donor lung receives special handling, there is a time limit.

If you live more than 1½ hours away from the hospital, the transplant coordinator will arrange transportation for you and one family member. If you live less than 1½ hours away, you must have someone drive you quickly but carefully to the hospital.

When you arrive at the hospital, go to Desk G-50 where you will be admitted.

What happens before surgery?

You will wait in the Transplant Unit until the final results of the crossmatch are determined. If the crossmatch results are negative (or compatible), you will be prepared for surgery (generally within a few hours of your admission).

Just before surgery, you will be asked questions, and tests will be ordered to make sure you are in the best possible physical and emotional condition for the transplant.

If you have a cold, sore throat, fever or any type of infection, it is very important to tell the nursing staff. It also is very important to tell the staff about any other problems you may have.

A complete physical, chest X-ray, blood tests and an electrocardiogram (EKG) will be completed, and the results will be reviewed by your doctor.

While you are being prepared for surgery, a Cleveland Clinic transplant surgeon will remove and prepare the donor lung.

If you have a significant medical problem or any signs of infection, or if the donor lung is determined to be unacceptable, the surgery will be canceled. It is better to wait until another lung becomes available than to risk a transplant when you are not physically ready.

Before you go to the operating room, you will be asked to:

Wear a hospital gown

Empty your bladder

Remove your dentures or partial plate

Remove your eyeglasses or contact lenses

Remove jewelry, makeup, nail polish and hair pins

To prepare you for the transplant surgery, the incision area will be shaved (from your chest to your knees) to prevent infection. You also will have an intravenous tube (IV) inserted in your arm to deliver fluids and medication. Before going to the operating room, you will be given a sedative to help you relax and make you sleepy.

What happens during surgery?

An anesthesiologist will inject general anesthesia (pain-relieving medication) through your IV, which will make you go to sleep. After you are asleep:

A central venous catheter is inserted into a vein in your neck or groin. This type of catheter is used to deliver fluids, nutrition solutions, antibiotics or blood products directly into your bloodstream without frequently having to insert a needle into your vein.

A tube is placed in your mouth that goes down your throat and into your windpipe (trachea) to help you breathe. The tube is attached to a ventilator that will expand your lungs mechanically.

You are placed on a heart/lung machine to allow surgeons to bypass the blood flow to the heart and lungs.

A nasogastric tube is inserted through your nose into your stomach. This tube drains secretions from your stomach.

A tube called a catheter is placed in your bladder to drain urine.

The surgeon carefully removes your lung and replaces it with the donor lung.

Where can my family wait?

Family members and friends are invited to wait for you in the Family Waiting Lounge until the surgery is completed. This waiting area has a play room for small children, a television, reading materials and comfortable chairs.

The surgery lasts six to 12 hours. Cleveland Clinic has several cafeterias and restaurants, a gift shop and a Health Information Desk that may be of interest. We ask visitors to sign in and out of the waiting area, and provide a phone number so we can contact them if necessary.

A member of the transplant team will meet with your family in the Lounge to keep them updated on your condition. Your family will be notified when the surgery is complete.

For More Information

If you have any questions or concerns, please call us at 216.444.8282. We will be happy to answer your questions.

After the Surgery

After surgery, you will be taken to the Intensive Care Unit (ICU) where you are closely monitored. You will be very drowsy during this time and will be sleeping most of the time.

Special monitoring equipment will check your pulse and blood pressure every 15 minutes. Occasionally, this monitoring equipment will beep or sound an alarm. This does not necessarily mean anything is wrong. Regularly, an electrocardiogram will be done to measure your heart rhythm and rate.

Your weight, and your intake and output of fluids will be checked frequently so your doctor can determine how well your heart and lung are functioning.

The IV in your arm and the catheter in your neck or groin will still be in place to deliver fluids and medicines. The catheter also helps your doctor determine the pressure in your heart chambers to evaluate its function.

You will have a tube in your throat leading to your windpipe (called an endotracheal tube). This tube is connected to a ventilator to help you breathe and receive the right amount of oxygen. At first, you might feel like you aren’t getting enough air. It takes time to get used to the machine. Try to relax and breathe with the ventilator to make it easier to breathe.

When you are connected to the ventilator, you will not be able to talk. To communicate with your nurse, you can nod or shake your head to indicate "yes" or "no." Although this tube might be uncomfortable, it is necessary to help you breathe. As your lungs expand and when you are breathing on your own and getting the oxygen you need, you will be taken off the ventilator (usually in one to two days).

You will have a dressing over your incision site. The nurse will check the incision frequently to detect bleeding.

The nasogastric tube and urinary catheter will remain in place for a few days up to a week, until your bowel and urinary functions have returned to normal. If the catheter feels uncomfortable, tell your nurse so it can be adjusted.

A chest drainage tube will remain in place for a few days to drain the fluid and blood that collect after surgery around the lungs.

Once your transplant team has determined your condition is stable, you will be transferred from the ICU to your room in the Transplant Unit. At times during your recovery, you might need to return to the ICU for specialized monitoring to ensure your best recovery.

For information on key data for the lung program and other solid organ transplants please visit, www.ustransplant.org. This third party resource evaluates all solid organ transplant programs in the United States. You will be able to find solid organ transplant outcome information including; number of transplants performed, survival rates, wait list times and other vital statistics. In addition, you will be able to research OPOs across the country and compare programs regionally and nationally.

A pre-transplant evaluation includes a complete physical, meetings with members of the Lung Transplant Team, and a series of tests. The evaluation might take several visits.

The pre-transplant evaluation is performed to make sure you are physically able to undergo a transplant. The evaluation helps the Transplant Team identify and treat any potential problems before the transplant, as well as avoid potential complications after the transplant.

The pre-transplant screening is first performed to make sure a lung transplant is the right treatment for you.

Before your pre-transplant screening

Before your pre-transplant screening, a transplant coordinator will contact you and your doctor to gather important information about your medical condition. This information includes:

Brief medical history, including medicines

Pulmonary function studies

Computed tomography (CT) scan and/or chest X-ray, if performed in the last year

Insurance information

Once this information is received, a transplant coordinator will contact you for a telephone interview to further discuss your medical history and lung disease.

The day of your screening appointment

Your screening appointment day will begin with a series of breathing tests, discussion of your medical history, and a physical examination. You will also meet with members of the Lung Transplant Team, including the pulmonologist, transplant coordinator, financial coordinator, and social worker.

You might have to answer similar questions with each team member. Please be patient. Although the questions are similar, each specialist is concerned with a specific aspect of your health and will gain a different perspective of your lung disease.

During the pre-transplant screening

During the pre-transplant screening, you will have several X-rays, laboratory tests, and breathing tests (called spirometry tests) to make sure you are eligible for a lung transplant.

The spirometry tests provide information about the extent of your lung disease and how well your lungs function. The tests are not painful, but might be uncomfortable. You will also meet with a transplant pulmonologist (a staff doctor with extensive training and experience in lung disease and transplantation). The pulmonologist will ask you questions about your condition.

The screening generally lasts most of the day. If the results of the screening evaluation indicate you are eligible for a lung transplant, you will be scheduled for a pre-transplant evaluation.

Testing

Lab testing will be completed during your pre-transplant evaluation appointment. This testing will include a nicotine/cotinine blood level. This test indicates whether you are smoking, chewing tobacco or nicotine gum, using inhaled nicotine products, or are exposed to second-hand smoke. The International Guidelines for Lung Transplant Candidacy require a patient to be nicotine-free for six months before undergoing an evaluation for transplantation.

Insurance information

It is the responsibility of you and your referring doctor to have insurance approval in place for your screening appointment. Please notify your insurance company of your pre-transplant screening appointment with Cleveland Clinic’s Transplant Center. Make sure your insurance company will provide coverage for the pre-transplant screening. (Many insurance companies will only provide coverage at specified centers.)

More information about insurance coverage will be provided on the day of your pre-transplant evaluation appointment.

Social worker

You might see a social worker during your evaluation appointment. Social workers can provide personal support to you and your family throughout the transplantation process. Social workers also offer:

Counseling regarding lifestyle changes

Referrals to community and national agencies and support groups that offer both information and support to transplant patients

Information about home care services

Financial counselor

You will meet with a financial counselor who can review your insurance coverage for pre- and post-transplant expenses. The financial counselor also can provide information about Social Security disability, supplemental security income, Medicaid, and Medicare.

Lung Transplant - Financial Questions

If you have been approved for a lung transplant and are going to be placed on the organ waiting list, you will need to prepare yourself financially and clarify your insurance coverage while you wait for your transplant.

The transplant financial counselor and the transplant coordinator are always available to answer your questions and address your concerns, but you will also need to contact your insurance company to clarify your coverage. The following questions will help you sort out your insurance coverage and help you plan for the expenses of transplantation.

Questions for your insurance company:

What part of the transplant cost is covered? How does this apply to my deductible?

What is the deductible on my insurance coverage? What happens if my financial coverage runs out?

How can I cut down on insurance expenses to make sure my coverage lasts as long as I need it?

How will a change in my job status affect my insurance? What would the increase be in my deductible?

What pre- and post-transplant tests are covered? Do I need to go to a certain facility for these tests to be covered?

Does my plan cover the expenses incurred by my organ donor?

Are assistive breathing devices covered by my insurance plan?

Are expenses for food, housing, and transportation covered while I wait for my transplant?

How much coverage will I receive for post-transplant medicines? What is the co-pay amount?

Questions to ask your transplant financial counselor:

What financial coverage is accepted by the hospital (such as Medicare, Medicaid, private insurance)?

How much will the transplant cost? How much will I have to pay?

Transplant-related expenses to consider:

Loss of income due to leave of absence from work

Child care (if appropriate)

Transportation to and from Cleveland Clinic’s Transplant Center for you and your support person

Emergency visits to the Transplant Center

Parking expenses for visits to the Transplant Center

Accommodation expenses or temporary housing expenses associated with being accessible to the Transplant Center (for you and family members)

Long-distance telephone expenses if relocation is necessary (to be more accessible to the Transplant Center)

Food expenses for family support person

Post-transplant medicine costs

Post-transplant follow-up tests and appointments

A Team Approach

The Lung Transplant Team at Cleveland Clinic is specially trained in meeting the needs of lung transplant patients. The team is committed to providing comprehensive care in a compassionate setting. The Lung Transplant Team members include:

Transplant surgeons

Transplant pulmonologists

Infectious disease team

Pharmacologists

Transplant coordinators

Transplant fellows and residents

Registered nurses

Nursing assistants

Dietitians

Social Workers

Financial counselors

Physical therapists

The following Cleveland Clinic Transplant Center doctors and staff specialize in Lung Transplant:

Lung Transplant Leadership

Kenneth McCurry, MD Program and Surgical Director Lung and Heart/Lung Transplantation Board-certified in general surgery and cardiothoracic surgery 216.445.9303

Pharmacokinetics Specialist

Pulmonary Rehab Coordinator

National Waiting List Organ Donation

We cannot predict how long you will be on the national waiting list to receive a liver. It could be days, a few weeks or even several years. Placement on the waiting list does not guarantee that you will get an organ.

When and if there is an organ that becomes available for you, your transplant coordinator will notify you. Have a plan in place so that you can leave your home on short notice. There is always a possibility that the donor lung is not functioning properly or the donor may become too unstable to continue with transplant. Please do not be too disappointed if this happens. We always have your best interest uppermost in our minds.

What Happens After Surgery

Visiting Hours

The visiting hours in the ICU are different for each patient. Your Transplant Team will decide when you are well enough to see visitors and will tell your family when they are able to visit. Generally, after you’ve recovered from anesthesia, your family may see you in the ICU periodically, after checking with your nurse.

After you are transferred to your room in the Transplant Unit, the visiting hours are not strictly enforced. However, the staff recommends no more than two visitors at one time, since rest is an important part of your recovery. The Transplant Unit also requests that reasonable hours (from 9 a.m. to 8 p.m.) be observed. Children under age 6 should not visit while the patient is hospitalized. If you have any questions or concerns about visiting hours, please ask the Transplant Unit staff.

Here are some tips for making your hospital stay more comfortable:

Bring a tape player, favorite music, books, or other things from home to make your stay more comfortable.

Personalize your hospital room with photos of family and friends, cards, and get well wishes—whatever makes you feel comfortable.

If nights are especially stressful, ask for special arrangements to allow your support person to stay with you. (Patients in the Children’s Hospital may always have a support person remain overnight. No special arrangements are necessary.)

Keep a calendar of events or record your thoughts and feelings in a diary or on a tape recorder. Try to take one day at a time rather than worrying about what will happen next week.

Pain

As you recover and "wake up" from the anesthesia, you might experience pain and/or nausea. You also will feel some pain at your incision site.

In most cases, your pain will be managed by a patient-controlled pain pump to make you as comfortable as possible. The pain pump has a hand-held button that will allow you to deliver pain medicine (as prescribed by your doctor) directly into your IV on demand (when you decide you need it). After a few days, your discomfort should gradually decrease.

Breathing exercises and activity

A healthcare provider will show you how to do deep breathing exercises with an incentive spirometer. An incentive spirometer is a breathing aid to help keep your lungs clear and active while you are recovering from surgery.

You also will be asked to cough frequently. Because coughing will put pressure on your incision and might be painful, we recommend holding a pillow against your chest while you cough. Coughing helps remove secretions from your lungs to prevent infection.

It is important to change positions and move your legs and feet often during your recovery to maintain your circulation and improve your strength. The nurse will help you with these activities.

As soon as possible after surgery, your nurse will help you get out of bed and walk in the hallway. Your family and friends can walk with you when they visit. Stop and rest whenever you feel tired, but try to increase the distance you walk a little every day.

Diet Restrictions and Hospital Routine

Initially, you will be given intravenous fluids and food through the tube in your arm.

After the tube in your throat is removed, you might only be able to eat ice chips and/or drink clear liquids. Your diet will gradually be increased to solid food over the next few days after your surgery.

A low-fat, low-sodium diet is required after transplant. If you have diabetes, you will follow the same diet you had before your surgery.

Initially, a member of the surgical team will visit you to tell you about the surgery. Every day while you are in the hospital, you can expect early morning visits, as well as periodic visits at night, from your doctors. Your transplant coordinator also will check on your progress frequently throughout the day.

The dressing over your incision will be changed, and blood samples will be taken every morning. The blood samples are tested in a laboratory, and the results indicate how well your new lung is working.

Your weight will be checked every day. Your weight reflects your fluid level and how well your kidneys are functioning.

Your urine output also will be measured daily. Once the catheter is removed, make sure you collect your urine so the nurse can record the amount.

How much you eat and drink will be recorded daily.

Every day, you will gradually increase your activity. You also will continue to learn more about your medicines and daily healthcare in preparation for your recovery at home.

Although you might find it difficult to be so dependent on your healthcare providers for your daily needs, you must remember that they are specially trained and know what type of care you need. You should be reassured that your healthcare providers are doing everything possible to help you regain your health.

Trouble sleeping after surgery

Yes. Many people complain of having trouble sleeping for some time after surgery. You might experience insomnia (an inability to sleep) because of:

The effects of anesthesia

Discomfort related to healing

Unfamiliar surroundings or noisy environment

Stress from personal concerns

Side effects from medicine

If you cannot sleep, try these tips:

Arrange the pillows so you can maintain a comfortable position.

Avoid napping too much during the day. At the same time, remember to balance activity with rest during recovery.

If you feel nervous or anxious, talk to your spouse, partner, or a trusted friend. Get your troubles off your mind.

Listen to relaxing music.

Practice relaxation techniques. Tense and relax your muscles. Begin with your feet and work your way up to your shoulders.

Length of Stay

You can expect to stay in the hospital two to three weeks, depending on how quickly you recover from surgery and whether you develop any complications.

Remember, each patient has a different rate of recovery. You will be discharged only after your Transplant Team has determined that you have regained your strength and your health is stable.

You can expect to remain in the Cleveland area for an additional two to three weeks after discharge for close medical observation.

Ten Tips for a Healthy Lung Transplant Recovery

Ten Tips for a Healthy Lung Transplant Recovery

Take all of your medications exactly as prescribed.

If you have any pre-transplant medications left, do not take them unless otherwise instructed by your healthcare provider.

Keep a list with you of all your medications and their dosages.

Do not take any other medications (over-the-counter or prescribed medications) unless you talk to your doctor first.

How will my diet change after the lung transplantation?

Because of the new freedom to indulge in many different foods, and an increased feeling of hunger due to medications such as prednisone (Deltasone), it is easy to see why excessive weight gain is a common problem for many transplant patients.

To promote healing after lung transplantation surgery, you should eat more lean meat, poultry, fish and low-fat dairy products. You should include a variety of grains, fruits and vegetables for adequate calories, vitamins and minerals.

Will I have a nutritional plan to follow?

Yes. In order to monitor your weight gain after transplant surgery, a registered dietitian will work with you to develop a nutritional plan. This plan will be determined by your weight, blood work results and medications.

The information below describes some of the dietary guidelines a dietitian may recommend for you. These guidelines cover only some of the changes that may take place in your diet. Your dietitian will plan a nutritional program to meet your personal needs.

Potassium

Some transplant medications may cause your potassium level to dramatically increase or decrease. This is a serious condition; but fortunately, it usually does not last long. In order to control your blood potassium level, make sure to eat the foods your dietitian recommends.

Food Guide Pyramid

Sodium or Salt

Many people experience high blood pressure or fluid retention following lung transplantation. If fluid retention or high blood pressure are problems for you, the dietitian will incorporate low-salt foods throughout your meal plan.

You may need to follow a low-sodium diet indefinitely after transplant.

How can I control my weight and cholesterol levels?

Two common long-term problems for transplant patients are weight gain and high cholesterol levels. The following are suggestions that may help you control both:

Weight Gain

The medication prednisone (Deltasone) may cause you to experience an increased appetite, which could lead to excess weight gain. Because you may or may not need to gain weight after your transplant, it is important to discuss this concern with your dietitian.

If you do need to watch your weight, it doesn’t mean you have to eat less food, just be more selective about the foods you do eat.

Your dietitian will work with you to achieve and maintain your ideal weight. In general, you should follow these suggestions:

Limit foods that are high in fat and calories.

Include more high fiber foods, such as fruits, vegetables, whole grain breads and pasta in your diet.

Consult your physician for recommendations on the types of exercise you can include in your daily schedule.

High Cholesterol Levels

By limiting fat in your diet and eating foods high in fiber, you may be able to control high cholesterol levels.

If you are overweight, your dietitian will discuss a diet plan that is low in both fat and cholesterol.

How can I make an appointment with a dietitian?

Registered dietitians are available in the hospital, at the Transplant Center and also in the Department of Nutrition Therapy.

If you have questions or need to schedule an appointment with a dietitian, please call 216.444.3046 or 800.223.2273, ext. 43046.

Nutrition Hotline: 216.445.2710.

For More Information

If you have any questions or concerns, please call us at 216.444.6996. We will be happy to answer your questions.

Returning to Your Regular Activities

Now that I feel better, when can I return to my regular activities?

You can resume your previous activities as soon as you feel better, but remember that your recovery will take several months and you should increase your activity gradually. A daily pulmonary rehabilitation program, prescribed by your physical therapist, will strengthen your lung and continue to improve your overall health as you recover at home.

You will not injure yourself or your new lung if you follow these general guidelines:

Do not lift anything over 5 pounds (including your suitcase when you leave the hospital) and avoid strenuous physical work for at least six to eight weeks after surgery. It is important that you also not lift anything greater than 10 pounds after six months from the date of your surgery.

Avoid driving for at least six weeks after surgery. Plan ahead so a friend or family member can help out during this time. When you are in a motor vehicle, always wear your seat belt.

Gradually increase your physical activities after your incision has healed. Exercise is encouraged. We recommend beginning with stretching exercises and walking to help you regain your strength. Pay attention to how you feel when exercising; stop and rest when you feel tired or if you feel pain.

As a general rule, rough contact sports should be avoided since they may cause injury to your transplanted lung. If you have doubts about any activity, please ask your doctor or transplant coordinator.

Keep your home and work environments smoke-free. Don’t go near areas where there are fumes or smoke, and avoid areas where people are smoking.

Call your physician if you have a temperature over 100°F, have a cough that is different from other coughs you had before the transplant; are feeling overly tired or short of breath; are dizzy; or have any sores, blisters, new growths or lumps (check your neck, armpits and groin and women should check their breasts for lumps). Go to the emergency room if you have a cut that is deep or bleeds heavily.

See your family physician for a complete physical every year after your transplant.

What to do if you have trouble sleeping?

Many people complain of having trouble sleeping for some time after surgery. You may experience insomnia (an inability to sleep) because of discomfort related to healing, stress from personal concerns or side effects from your medications.

If you cannot sleep, try these tips:

Establish a regular sleep schedule; go to bed and get up about the same time every day.

Make sure your bed and surroundings are comfortable. Arrange the pillows so you can maintain a comfortable position.

Keep your bedroom dark and quiet.

Use your bedroom for sleeping only; don’t work or watch TV in your bedroom.

Avoid napping too much during the day. At the same time, remember to balance activity with rest during recovery.

If you feel nervous or anxious, talk to your spouse, partner or a trusted friend. Get your troubles off your mind.

Listen to relaxing music.

Do not take sleeping pills. They are very harmful when taken with your other transplant medications.

If you can’t sleep, get up and do something relaxing until you feel tired. Don’t stay in bed worrying about when you’re going to fall asleep.

Avoid caffeine.

Maintain a regular exercise routine, but don’t exercise within two to three hours before bed time.

When will I be able to return to work?

Many lung transplant patients are able to return to work within a few months after surgery. However, various aspects of the recovery process can affect the timing of your return.

You will need to discuss returning to your job with your doctor and transplant coordinator. When the time approaches, a “return to work” letter will be provided. This will let your employer know when you may begin working and what limitations, if any, you may have at work.

How soon can I take a vacation?

You may travel as soon as you are feeling better, but always let your transplant coordinator know when you plan to go and provide a phone number where you can be reached.

By remembering these traveling tips, your vacation will be worry free:

Always take all of your medications with you, and make sure you have enough medications to last throughout your trip.

If you are traveling by plane, carry your medications with you. Never check them with your luggage. You may need a letter from the Transplant Team that verifies all of your medications, especially if you are traveling internationally. Pack this letter with your medications.

Always wear your Emergency Medical Identification.

Make sure you have Cleveland Clinic Transplant Center’s phone number.

Check to see if there is a medical laboratory or transplant center nearby where you can have your blood work completed. This lab will need to report your results to Cleveland Clinic’s Transplant Center.

Be careful to avoid infection when traveling. In areas where the water might be unsafe, drink bottled water or other beverages (order beverages without ice). Swim only in chlorinated pools.

Select food with care to avoid illness.

Sexual activity after transplantation

There are no restrictions on resuming sexual activity.

To avoid straining yourself while recuperating, you may want to use a low-stress position.

Recommendations for Female Transplant Patients

Even if your periods seem to have stopped, you should always use a safe and effective method of birth control after transplant surgery. We do not recommend birth control pills, because of the added risk of side effects.

Pregnancy is not recommended, especially within one year after transplant surgery. The medications you take after surgery are harmful to a developing baby, and the stress of pregnancy on your body can be harmful to your health.

If you desire to have children after your transplant, there are other options such as adopting and serving as foster parents.

Please discuss these options with your transplant coordinator or social worker.

Recommendations for Male Transplant Patients

Male transplant patients may experience difficulty with erections after surgery. This may be caused by a reduction of blood flow to the penis or it maybe a result of the transplant medications. In most cases, this situation can be corrected.

If impotence becomes a problem for you, please feel free to discuss any concerns with your physician or transplant coordinator. Cleveland Clinic has specialists who are available to help you with these issues.

For More Information

If you have any questions or concerns, please call us at 216.444.8282.

Contacting the Family of Your Organ Donor

Any time after your transplant, you may decide to write to the family of your organ donor. This decision is a personal one. In order for you to make the decision, it may be helpful for you to know that organ donor families have expressed their appreciation for the correspondence they receive from recipients.

You do not have to contact the donor’s family. This information is provided for you only if you decide to do so.

What information should I include?

Here is some information you may want to include in your letter to the organ donor’s family:

Your first name only

The state where you live

Recognize the donor family and thank them for their gift

How long you waited for a transplant, and how the wait affected you and your family

How the transplant has improved your health and changed your life

What has happened in your life since the transplant

Mention if you are married, have children, grandchildren, etc.

State your hobbies or interests

What information should not be included?

Do not include your address, city or phone number.

Do not include the name or location of the hospital where your transplant surgery was performed, nor the names of your transplant healthcare providers.

Use caution when including religious comments, as you do not know the religion of the donor’s family.

How can I send the letter to my donor’s family?

After you write a letter to the donor’s family, place it an unsealed envelope (The correspondence is reviewed for confidentiality.) and include a separate sheet of paper with your full name and date of transplant. Send this information in a separate envelope to:

After receiving your correspondence, the transplant coordinator forwards it to Lifebanc, Northeastern Ohio’s organ procurement agency. Lifebanc will notify the donor’s family that there is correspondence from the recipient.

Confidentiality

In general, the identities of the donor and the recipient of the organ are confidential, to protect each individual’s privacy.

Although there is no law that a donor’s family and the organ recipient cannot meet and know each others’ names, all organ procurement agencies (such as Lifebanc) maintain the privacy of the donors and recipients.

Will I hear from the donor’s family?

You may or may not hear from your donor’s family. Some donor families may feel that writing about their loved one and their decision to donate helps them with their grieving. Others choose not to write to the organ recipient.

If the donor’s family chooses to respond, they will send a letter to Lifebanc. Lifebanc will forward the correspondence to your transplant coordinator, who will forward the response to you.

For More Information

If you have any questions or concerns, please call us at 216.444.6996. We will be happy to answer your questions.

Preventing Infection at Home

Why is there such a risk for infection during transplants?

One of the jobs of your immune system is to fight infection. Immediately before your transplant, you will need to take immunosuppressant medications, which suppress your immune system to prepare your body to receive the transplant. These medications decrease your body’s ability to fight infection. When the body’s defenses are down, infection can spread quickly.

There are several ways you and your family, friends and healthcare providers can help prevent infection after the transplant.

What can I do to prevent infection?

Practice good hygiene

Frequently wash your hands with soap and warm water, especially after using the bathroom. Lather well, rubbing your hands back and forth together, to clean all surfaces including the nail beds and the webbing between your fingers.

Bathe every day. Avoid using hair spray, oils or creams. Keep your hair clean and neat. If you have oily hair, try to keep it pulled back from your face.

Wash your face in the morning and at bedtime, using a mild soap and washcloth. To help prevent acne, keep your skin as clean and oil-free as possible.

Take care of your mouth and teeth.

Examine your mouth and gums daily.

After each meal, brush your teeth with a small, soft toothbrush and fluoride toothpaste.

Use dental floss daily.

If a mouth sore develops, eat foods that are warm or at room temperature, and avoid consuming acidic foods and beverages (such as tomatoes and oranges).

Protect your skin from scratches

Sores and other irritations might lead to infection.

If you have a cut (even if it’s small), clean the area well with soap and water or hydrogen peroxide. Dry your skin, and cover the cut with a sterile bandage.

What can my friends and family do to help prevent infection?

Do not send or bring live plants. Fruit baskets, balloons and fresh or silk flowers make nice gifts.

Follow the transplant unit’s guidelines about hand washing.

Do not visit if you have cold or flu symptoms such as a fever, cough or runny nose. Please return when you are feeling well.

For More Information

If you have any questions or concerns, please call us at 216.444.6996. We will be happy to answer your questions.

Transplant Rejection

What are the risks of transplantation?

The risks of transplantation are the same as those of any surgery, including the risk of bleeding or breathing problems. Some transplant recipients also may experience side effects from the medications.

The two main complications of transplant surgery are organ rejection and infection. Since the body recognizes the new lung as a foreign object, it will normally try to get rid of it or "reject" it. Anti-rejection drugs taken after surgery help prevent a rejection episode, but they also inhibit part of the immune system. Since the body’s ability to fight infection is decreased, transplant recipients are more prone to infections.

Years of experience, research and improved medications help prevent rejection, and your transplant team will take every precaution to prevent these complications. While you are recovering in the hospital, you will learn to recognize signs of rejection and infection.

What is transplant rejection?

The body’s immune system protects you from infection. Immune cells recognize the transplanted lung as different from the rest of the body and attempt to destroy it; this is called rejection and is your body’s way of not accepting the new organ.

After transplant surgery, you are prescribed immunosuppressive drugs to "fool" your immune system into thinking your new lung is your own so it doesn’t try to attack the new lung.

Although rejection is most common in the first six months after surgery, it can occur at any time. Fortunately, rejection can be treated, especially if the signs of rejection are recognized early. While you are in the hospital, the Transplant Team can usually recognize a rejection episode before it causes any major or irreversible damage.

After you go home, it's vital for you to be aware of the possible signs of rejection so you can report them to your healthcare providers and be treated immediately. It is also very important for you to continuously take your medications as prescribed, have your blood work drawn as scheduled, and follow your pulmonary function test and bronchoscopy schedules.

What are the warning signs of possible rejection?

If you are experiencing any of these symptoms, contact your transplant coordinator immediately:

How is rejection identified?

The Transplant Team will be able to determine if your body is rejecting your lung by completing daily tests of pulmonary function during your hospital stay. If the Team thinks you may be experiencing any problems with your new lung, the following tests may be completed:

Repeated blood work including a complete blood count

Bronchoscopy

Lung biopsy and surveillance bronchoscopy

These tests are performed routinely as part of your follow-up care (at three weeks, six weeks, three months, six months, nine months and one year after transplant surgery)

What is a lung biopsy?

A lung biopsy is a procedure in which a small sample of lung tissue is removed and tested. A lung biopsy is usually performed on an outpatient basis.

In order to take a biopsy, or a small sample of tissue, the skin above your lung is numbed to allow a small needle to pass directly through to your lung. Once complete, a microscope is used to examine the sample of tissue and establish a diagnosis.

The actual biopsy generally takes between 20 to 30 minutes. You will be required to lie flat for two hours following the procedure to prevent bleeding.

How is rejection treated?

If rejection develops, your physician will prescribe medications to treat rejection and prevent continued complications. In order to control the rejection, you may need to be admitted to the hospital, or you may receive care in an outpatient setting.

Will rejection treatment cause side effects?

The medications used to treat a lung rejection episode are strong drugs. The first few doses may cause the following side effects:

Fever, chills

Headaches

Nausea, vomiting

Weakness

Diarrhea

General flu-like symptoms

In order to help control these symptoms, you will receive a pre-medication of acetaminophen (Tylenol) and diphenhydramine hydrochloride (Benadryl) before each dose.

For More Information

If you have any questions or concerns, please call us at 216.444.8282. We will be happy to answer your questions.

What You Need to Know About CMV

Anti-rejection drugs taken after surgery help prevent a rejection episode, but they also inhibit part of the immune system. Since the body’s ability to fight infection is decreased, transplant recipients are more prone to viruses and infections.

What is CMV?

CMV is short for Cytomegalovirus. It is a type of herpes virus. CMV can affect almost any organ and cause almost any type of infection.

What are the symptoms of CMV?

Since CMV can affect almost any organ, it can cause many different symptoms. However, the majority of CMV infections are without symptoms (asymptomatic). Some symptoms include:

Fever over 100°F (38°C)

Low white blood cell counts (leukopenia)

Muscle weakness

Arthritis-like pain in the knees, hips, ankles or wrists

Fatigue

Mental confusion

Shortness of breath

Blurry vision or loss of vision (The CMV virus often infects one eye and tends to infect the other.)

Blood in the stools, nausea, vomiting or diarrhea (due to CMV gastritis or colitis — stomach or colon infection)

What causes CMV?

CMV is most often caused by a reactivation of CMV acquired long before your transplant. If you develop your first CMV infection, the virus likely came from your transplanted organ. (The donor may have been exposed to the virus.)

CMV is transmitted by contact between mucous membranes (the mouth and genitals) and live virus present in the secretions of infected CMV patients.

How is CMV diagnosed?

CMV is difficult to diagnose, since its symptoms mimic many other illnesses. CMV may be detected through blood tests that indicate the presence of CMV antibodies. Urine and sputum cultures also may detect the virus. Biopsy of the infected organ can also indicate the presence of the CMV virus.

How is CMV treated?

Patients diagnosed with CMV are treated with an anti-viral medication, delivered intravenously (through an IV). Recovery may take a long time, and patients are advised to increase activity and exercise gradually, while including periods of rest throughout your recovery.

There is no cure for CMV. Once you have been infected with CMV, the virus remains latent and can cause infection again in the future.

For More Information

If you have any questions or concerns, please call us at 216.444.8282. We will be happy to answer your questions.

Follow-up Visits

After you go home, it will be your responsibility to seek consistent and proper medical care to follow-up your lung transplant. It is very important that you maintain your follow-up appointment schedule as recommended after your lung transplant.

Your follow-up appointments play a vital role in effectively monitoring your progress, as well as your lung function and your response to the medications after your lung transplant. These visits also provide you the opportunity to ask questions about your lung transplant recovery.

The role of your local physician in your lung transplant recovery

Your local physician is the doctor who cared for you before you came to Cleveland Clinic for your lung transplant. Your local physician will be notified when you receive your lung transplant and when you are discharged from the hospital.

The Lung Transplant Team will work with you and your local physician to coordinate your care and adjust your medications as necessary.

If you are sick, you should first see your local physician in his or her office, or if necessary, you should go to the nearest emergency room. Your local physician will perform an examination, obtain your current laboratory test results and order any other necessary tests. Your local doctor should discuss your illness and treatment with Cleveland Clinic Transplant Team, as it relates to your lung transplant.

Transplant Medications

The most important step in maintaining your health after your transplant is to take your medications exactly as prescribed. These drugs help prevent rejection and infection, and must be taken for the rest of your life.

What will I need to know about taking my medications?

Before any medication is prescribed, your physician will ask you:

If you are allergic to any medications

If you are currently taking any other medications (including over-the-counter medications)

If you have problems taking any medications

The type of medications, the dosage and side effects may be different for each patient. While you are in the hospital, the Lung Transplant Team will teach you about your medications and give you information sheets describing each drug and how to take it. Before you go home, the Transplant Team will make sure that you know:

The name of the drugs prescribed and their action

Please note: All medications have two names—the generic or chemical name (such as furosemide) and the brand name (such as Lasix). The Transplant Team will tell you both names of the medications.

The dosages, when (the time of day) and how to take the medications

The side effects and how you can treat or prevent them

Your family members are also encouraged to learn about your medications.

Will the drugs I’m taking cause any side effects?

Some of the drugs you are prescribed may cause unwanted side effects such as weight gain, acne or excess hair growth. Despite these side effects, never change the dose or stop taking your medications without first checking with your physician.

Many of the side effects can be controlled. Your doctor may adjust your dosage or offer other suggestions for managing the side effects. Keep all appointments with your doctor and the laboratory so your response to the drug can be monitored.

The individual drug information sheets contained in this notebook describe the common side effects of each drug and how to manage them.

Call your doctor or transplant coordinator if you become sick and vomit soon after taking your medication. Do not take a second dose without first talking to your healthcare provider. If you have diarrhea for more than one day, call your doctor or transplant coordinator. Also call if you have any other symptoms that are persistent or severe.

Does it really matter if I miss a dose?

Yes. It is very important to always follow the instructions for your medications every day to prevent rejection. The third major cause of transplant failure results from not taking anti-rejection medications as prescribed.

What if I forget to take my medications at the scheduled time?

If you miss a dose of your medication at the scheduled time, don’t panic. Take it as soon as you remember. However, if it is almost time for your next dose, skip the missed dose and return to your regular medication schedule.

As you begin to feel well, it may be easy to forget to take your medications, but always remember that your body never stops requiring the transplant medications. By taking your medications consistently and following-up with your physician routinely, you are assuming the most important job after your transplant.

Dose changes

Your physician will periodically change the dose of your medications. The dose may be changed because you are having uncomfortable side effects or because blood test results indicate a different dose is needed.

You will receive a medication dosage record to write down your medications and dosages. Every time your physician tells you to change the dose of your medication, cross out the previous dose and write in the new dose. (Use ink, not pencil, and do not erase previous information so you have a record of your earlier doses.)

Remember, never change the dose of your medication unless your physician has told you to.

Other medications

Never take other medications without first talking to your physician. This includes over-the-counter drugs (those you can buy without a prescription). Some over-the-counter drugs include aspirin, ibuprofen (Advil, Nuprin), vitamins, cold medicine, antihistamines, antacids, laxatives and sleeping pills. Some over-the-counter medications may decrease the effectiveness of your transplant medications and can cause unwanted side effects.

Can I get financial assistance to help pay my medication expenses?

Yes. Your healthcare providers realize your medications are expensive, especially since you must take them for the rest of your life. There are several government and state programs that offer financial assistance for medication expenses.

Please ask your healthcare provider what programs are available for you. You also can ask to see a financial counselor who can answer questions about insurance coverage and Medicare benefits related to your medication expenses.

Will any new medications be available?

Exciting developments in drug research are creating new immunosuppressive medications. Cleveland Clinic Lung Transplant Program participates in new drug studies on a continuous basis. You may be asked to take part in one of these programs after your transplant. All programs are strictly voluntary and have no influence on your transplant status.

General Medical Guidelines

Note: These are general guidelines. Be sure to ask your doctor or pharmacist for guidelines specific to your medication.

Keep a list of all your medications and their dosages with you.

Take your medications exactly as prescribed by your doctor.

Do not stop taking your medications unless you talk to your doctor first. Stopping your medication too early can cause the illness to return or make it more difficult to treat.

Do not double the dose of your medication.

If you miss a dose of your medication at the scheduled time, don’t panic. Take it as soon as you remember. However, if it is almost time for your next dose, skip the missed dose and return to your regular medication schedule.

Do not keep outdated medication or medication that is no longer needed. Throw away old medicines.

Store medications in a dry area away from moisture (unless your doctor or pharmacist tells you the medicine needs to be refrigerated).

Always keep medications out of the reach of children.

Contact your doctor immediately if you experience any unusual side effects after taking your medication.

Do not share your medications with others.

If you store your medications in a container, label it with the medication name, dose, frequency and expiration date.

Keep your medications in your carry-on luggage when you travel. Do not pack your medications in a suitcase that is checked, in case the suitcase is lost.

Take extra medication with you when you travel in case your flight is delayed and you need to stay away longer than planned.

Questions to Ask about your Medication

Be sure you know the answers to these questions before you start taking any new medication:

What is the name of the medication?

Why do I need to take it?

How often should I take it?

What time of day should I take it?

Should I take it on an empty stomach or with meals?

Where should I store the medication?

What should I do if I forget to take a dose?

How long should I expect to take the medication?

How will I know it is working?

What side effects should I expect?

Will the medication interfere with driving, working or other activities?

Does the medication interact with any foods, alcohol or other medications (including over-the-counter medications)?

For More Information

If you have any questions or concerns, please call us at 216.444.8282. We will be happy to answer your questions.

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This information is provided by Cleveland Clinic and is not intended to replace
the medical advice of your doctor or health care provider.
Please consult your health care provider for advice about a specific medical condition.